Support service utilization and out-of-pocket payments for health services in a population-based sample of adults with neurological conditions

BACKGROUND: Social support can help to deal with the consequences of neurological conditions and promote functional independence and quality of life. Our aim was to evaluate the impact of neurological conditions on the use of support and health-care services in a population-based sample of community-dwelling adults with neurological conditions. METHODS: Data were from the Survey of Living with Neurological Conditions in Canada, which was derived from a representative sample of household residents. Formal and informal support received and out-of-pocket payments were assessed by personal interviews. Logistic regression was used to explore the association between support service utilization and six common neurological conditions (Stroke, Parkinson's disease, Alzheimer's disease/dementias, traumatic brain injury, spinal cord injury and multiple sclerosis) with stroke as the reference category. RESULTS: The sample contained 2,410 respondents and equate to an estimated 459,770 when sample weights were used. A larger proportion of people within each of the neurological conditions received informal support than formal support (at least twice as much). Samples with the non-stroke conditions were more likely to receive formal assistance for personal (odds ratios 2.7 to 5.6; P < 0.05) and medical (odds ratios 2.4 to 4.4; P < 0.05) care compared to the stroke group. Also, the non-stroke conditions were more likely to receive informal assistance (odds ratios 2.7 to 17.9; P < 0.05) and less likely to make out-of-pocket payments for rehabilitation therapy (odds ratios 0.2 to 0.3; P < 0.05) than the stroke group. The Alzheimer’s disease/dementia group had the highest proportion who received formal and informal support services. CONCLUSIONS: Our findings suggest that Canadians with neurological conditions receive more informal assistance than formal assistance. Furthermore, it appears that stroke survivors receive less support services, while those with Alzheimer’s disease/dementia receive the most compared to other adult neurological conditions. Such data can help inform the development of support services in the community.